Why It Still Matters
By Leah Harris
In the days prior to announcing her decision to end her candidacy for the 2020 presidential race, Kamala Harris released a plan to address “the mental health care crisis.” The plan was received with widespread applause from family members and those seeking to dismantle the civil liberties and privacy rights protections afforded to people with psychiatric labels. Harris’s plan was met with vociferous condemnation from psychiatric survivors, civil libertarians, and disability justice advocates, who vowed to fight it. While Harris has dropped out of the presidential race, the ideas behind her policy proposal have existed for decades, and are likely to endure.
Last month, the Senator from California declared to a crowd in Iowa: “mental health justice is on the ballot!” Harris said, “I have a mental health care policy that is robust, because I understand and have worked with these issues for years — that we have so much undiagnosed, untreated trauma in America. And we have got to stop stigmatizing this issue.” On November 25, Harris unveiled her mental health care plan in South Carolina.
We have failed to address trauma and mental health in our communities and in the criminal justice system for far too long. It’s time for an intervention. pic.twitter.com/QMkyxwnJmm
- Kamala Harris (@KamalaHarris) October 29, 2019
Key Elements of the Harris Plan
Harris’s “mental health care crisis plan” is the latest iteration of a series of controversial mental health policy proposals, heavily influenced by pro-force and coercion caregivers and family members, that have surfaced over the last few decades at the local, state, and federal levels. These include former Rep. Tim Murphy’s (R-Pa) Helping Families in Mental Health Crisis Acts of 2013 and 2015, key provisions of which were folded into the 21st Century Cures Act in 2016; as well as the RESPONSE Act , introduced in October by Senator John Cornyn (R-Tx).
What these mental health policy proposals share in common is an emphasis on promoting a range of coercive and restrictive interventions that infringe on the rights and privacy of persons with psychiatric diagnoses; in particular, of those individuals meeting the criteria for “serious mental illness” (SMI). SMI is , SMI is defined in the Harris plan as “mental, behavioral, or emotional disorders, such as schizophrenia or severe bipolar disorder, that substantially interfere with major life activities.” As Zoey Turtino writes in The Daily Campus,“This phrasing gives healthcare providers and policy makers free range to decide for themselves what is and isn’t considered a serious mental illness.” The pro-force advocates also frequently invoke the construct of anosognosia, or “lack of insight” into one’s condition, as both a defining characteristic of “SMI” and a pretext and justification for coercive and paternalistic policies. Psychiatrist Dinah Miller writes in Psychology Today that the term is “politically loaded: when someone uses it, by extension, it has come to mean that they are in favor of legislation to make it easier to treat patients against their will.”
Repeal of the IMD Exclusion
A cornerstone of the Harris plan included increasing access to inpatient hospitalization via the repeal of what is known as the Institutes for Mental Disease (IMD) Exclusion. The IMD Exclusion prohibits the use of Medicaid financing for adult psychiatric hospitalizations and residential facilities larger than 16 beds. This restriction was put in place at the very beginning of the Medicaid program in 1965 for a reason: to compel states to invest in community-based services instead of unnecessarily warehousing people in segregated institutional settings that are breeding grounds for abuse, neglect , and death.
The Harris plan called for doubling the number of treatment beds nationwide, with a priority focus on states said to have bed shortages such as Iowa, Nevada, South Carolina, and Michigan.
A key aspect of the narrative fueling Kamala’s plan is the oft-repeated assertion that “jails and prisons have become the new mental hospitals.” However, mental hospitals are also becoming the new jails and prisons, a fact which is rarely acknowledged in the mainstream media or by lawmakers. Recent suicide prevention requirements put forth by the Joint Commission, the accreditation body for psychiatric facilities, include substantial environmental adaptations that compel psychiatric hospitals to look and feel more akin to prisons rather than the therapeutic environments that they are imagined to be.
There is also a significant and growing body of research to show that psychiatric hospitalization is associated with an increased risk of suicide upon discharge, another fact rarely acknowledged in public narratives about the need for beds.
As Jennifer Mathis points out in a 2018 Psychiatric Services article advocating against repeal of the IMD rule:
“Although our mental health systems are in crisis, neither the IMD rule nor insufficient hospital beds are the primary problem. The primary problem is the failure to implement an effective system of intensive community-based services, which have been shown to prevent or shorten hospitalizations. Repealing the IMD rule would do little to alleviate the true crises in our public mental health systems and would likely deepen those crises.”
Regardless of one’s position on increasing access to institutions, a November 2018 Medicaid rule has essentially rendered the “need” for a legislative repeal of the IMD exclusion obsolete. The new rule , as mandated in the 21st Century Cures Act, encourages states to apply for Medicaid demonstration waivers to cover acute stays in IMDs, while also requiring states to demonstrate expanded access to community-based care options. In contrast, a legislative repeal of the IMD exclusion, as called for by Harris and others, would likely cost the Medicaid program around $40-$60 billion over a decade, according to a report by the Congressional Budget Office (CBO).
We are very happy to see @KamalaHarris release her plan on dealing with the mental health crisis. Highlights of Harris’s plan include repealing the IMD exclution and doubling the number of treatment beds nationwide. Thank you Senator Harris! https://t.co/1sKdZrfXp6
- Treatment Advocacy Center (@TreatmentAdvCtr) November 25, 2019
Increased funding and support for “Assisted Outpatient Treatment”
The Harris plan makes reference to “multiple studies” showing that AOT “improves treatment outcomes, lowers risk of arrest, violent behavior, and other criminal justice encounters , and reduces homelessness , all at lower costs and with fewer restrictions than inpatient treatment .”
Yet this characterization of AOT’s evidence base is based on a false interpretation of the existing scientific literature. As Robert Whitaker explains in a recent Mad in America Report , despite increasing state and federal support over the last two decades for AOT, there is scant evidence as to its effectiveness. To date, there have been only three randomized clinical trials (RCTs) of the program-two in the United States and one in the UK. A 2011 Cochrane Collaborative review of the evidence for AOT’s clinical and cost effectiveness resulted in findings that stand in strong contrast to the positive claims made by Harris and AOT advocates regarding the program. Whitaker goes on to note :
“In all three RCTs, there was no significant difference in outcomes. The Cochrane review concluded that compulsory outpatient treatment orders do not ‘result in better service use, social functioning, mental state, or quality of life compared with either standard voluntary or supervised care.’ The only superior outcome for those on compulsory orders in these three RCTs was that the patients were ‘less likely to be victims of violent or non-violent crime.’ Based on results from this review, there is no strong evidence to support the claims made for compulsory community treatment that make it so attractive for legislators.”
There has been little to no research conducted on how former and current recipients of AOT orders themselves experience the program. In a 2018 Mad in America survey of 45 people, over half of respondents indicated that they were “very dissatisfied” with AOT, and 16% were “dissatisfied.”
Amend HIPAA to include ‘good faith’ disclosures
An additional plank in the Harris plan revolves around substantially eroding the privacy protections afforded by the Health Insurance Portability and Accountability Act (HIPAA), originally passed in 1996. In the Harris plan, this plank is entitled “Amend HIPAA to ensure family members can adequately support persons with mental illness.” What this means is that the plan would create a lower standard of privacy rights for people with psychiatric diagnoses and disabilities, which would allow providers to disclose protected health information to family members over a person’s objection “out of a good faith belief that it was necessary to enhance the health, safety, or welfare of the person involved or the general public.”
This proposal closely mirrors that of the HIPAA-weakening provisions found in Tim Murphy’s Helping Families in Mental Health Crisis legislation of 2013. These provisions were substantially toned down in the 2015 version of the legislation, due in large part to the efforts of disability and privacy advocates. The HIPAA provisions that were eventually folded into the 21st Century Cures Act do not alter the privacy law; instead they call for HHS to clarify the law in such a way as to “ensure that health care providers, professionals, patients and their families, and others involved in mental or substance use disorder treatment have adequate, accessible, and easily comprehensible resources relating to appropriate uses and disclosures of protected health information under HIPAA, and to issue guidance to clarify permitted uses or disclosures of protected health information.”
HHS has since issued such clarifying guidance on HIPAA, in compliance with the Cures Act. But this development has not deterred pro-force advocates from continued calls to dismantle the privacy law as regards people labeled with SMI, even if such efforts actually defy Congressional intent as spelled out in the Cures legislation.
In a 2019 joint letter to the Department of Health and Human Services (HHS), the American Civil Liberties Union (ACLU) and the Bazelon Center for Mental Health Law write: “The HIPAA Rules already contain the flexibility to permit communications between healthcare providers and with family members. But misunderstanding or misinterpretations of HIPAA have led to calls for its reform. Agency efforts would be better spent in providing more information and education as to the flexibility and constraints of the Rules, rather than to undertake revisions.”
The letter goes on to say that “HIPAA Rules already permit family, friends, or others who are involved in the patient’s care to receive protected health information that they need to know about the patient’s care under appropriate circumstances, including: with the patient’s permission; when the patient has been given the opportunity to object but does not; when a person poses a danger that could be averted by disclosure, in emergency circumstances, and when a person lacks the capacity to consent or object to disclosure.”
Reclassify “schizophrenia, schizoaffective, and bipolar disorder” as neurological illnesses
This rhetoric is aligned with a sustained push for the reclassification of schizophrenia, led by the advocacy group Schizophrenia and Related Disorders Alliance of America (SARDAA) and supported by the Treatment Advocacy Center and the National Alliance on Mental Illness. In May 2018, SARDAA requested to have schizophrenia included in the implementation of the National Neurological Conditions Surveillance System (NNCSS) provided for in the 21st Century Cures Act. NNCSS is a CDC program that received $5 million from Congress to gather data on the prevalence of and risk factors for neurologic conditions in the US population. Linda Stalters, a retired nurse who is CEO and founder of SARDAA, told Medscape Today, “We have the support of other organizations, family members, and patients, and there are multiple private Facebook pages supportive of caregivers and patients — for example, one has over 7000 participants, including people who hadn’t originally been supportive of this movement but are now.” SARDAA held a reclassification symposium on November 4 in New York City.
Reclassification efforts in the US occur amidst the backdrop of international advocacy efforts to do away with the diagnosis altogether, such as the Campaign to Abolish the Schizophrenia Label (CASL), headed up by psychiatrists Jim van Os and Marius Romme, as well as psychologists John Read and Richard Bentall, among many others. As Bentall told BBC News : “We do not doubt there are people who have distressing experiences such as hearing voices or paranoid fears. But the concept of schizophrenia is scientifically meaningless. It groups together a whole range of different problems under one label — the assumption is that all of these people with all of these different problems have the same brain disease.”
The Disability Community Fights Back
The Harris plan was immediately met with a swift public response from people living with psychiatric diagnoses and disabilities, as well as cross-disability advocates. Alice Wong, founder and director of the Disability Visibility Project, and co-partner, #CripTheVote, created a compilation of “responses, concerns, and critiques from mentally ill and disabled people & others.”
Vilissa Thompson, creator of #DisabilityTooWhite and founder of @RampYourVoice , and Dr. Amelia N. Gibson both questioned the HIPAA plank in Harris plan, and its assumption of universal “good faith” among mental health providers.
Do you know how many horror stories I know of that involves helping professionals who did NOT act in “good faith” to the clients they served in the mental health services field?
- Vilissa Thompson (@VilissaThompson) November 26, 2019
This needs some work. The section on HIPAA reads like it was written by a family support organization instead of in consultation with a group of adults who actually have mental illnesses/disabilities. “Good Faith” isn’t a reason to violate privacy or take away individual agency. https://t.co/UhckUIEZAS
- Dr. Gibson (@AmeliaNGibson) November 26, 2019
Freelance journalist and commentator Sara Luterman, in a Vox essay entitled “How Kamala Harris’s mental health plan could hurt the most vulnerable,” describes a 2014 experience with hospitalization for suicidal thoughts as “one of the most harrowing and dehumanizing experiences of my life.” Luterman characterizes the psych ward as “a world in which rights are just suggestions, and where staff exert an exceptional amount of control over every aspect of your life.”
Luterman explains how calls for increased “access” to inpatient psychiatric care run directly counter to the idea of “access” as enshrined in the Americans with Disabilities Act (ADA): “The ‘access’ promised in Harris’s plan is to locked wards, forced drugging, and the denial of the same right to privacy afforded to other Americans. Her proposed policy distorts ‘access’ beyond recognition.”
And Luterman writes of the high discontinuation rates of prescribed antipsychotics and mood stabilizers, the very drugs that people under AOT orders are typically compelled to take: “This is not because people are stupid or lack insight into their own illness. Antipsychotics and mood stabilizers tend to have heavy side-effect profiles.” She adds: “Assuming that a person is incompetent and that their perceptions are irrelevant will not make that person want to participate in mental health treatment.”
Azza Altiraifi underscored the ways in which the plan magnifies the violent intersectional oppressions faced by people of color in the carceral and mental health systems, tweeting: “This plan reflects the violent convergence of anti-Blackness, racism & sanism that undergirds the carceral state.”
Kamala is out here talking about expanding institutionalization, gutting HIPAA, and further involving cops in mental healthcare delivery. In the year of our Lord 2019, her ~progressive~ policy suggestion is to take an already violent system & make it more carceral/coercive? Whew.
& let me be clear: BIPOC Mad folks would bear the brunt of these proposed policy changes. We are disproportionately more likely than white folk to received mandated AOT, be medically incarcerated, & be killed by cops. So I’m TIRED of seeing white voices centered over Mad BIPOC.
- Azooz | عزوز 🇸🇩 ☪️ (@Azza_Alt) November 26, 2019
AOT, where it has been implemented, is often done so in a highly biased manner. According to a 2014 report by the Maryland Disability Law Center et al, “Studies on outpatient civil commitment conducted in North Carolina and New York revealed that people of color and those living in poverty are disproportionately impacted by involuntary community treatment orders.” The 2005 NYLPI report found that the implementation of AOT in New York is “severely biased.” In New York, African Americans were subjected to court orders five times more frequently than whites, while Latinx persons were two and a half times more likely than whites to be under a court order.
In North Carolina, two-thirds of individuals court-ordered to community treatment were African American, despite only representing 22% of the total state population. And 88% of AOT orders in New York were found to include some forced medication component. This is especially concerning due to the increased risk of long-term severe side effects that African-Americans can face from antipsychotic medication.
Other advocates pointed out how the erosion of HIPAA protections could tilt the power dynamic in favor of domestic abusers and family members wishing to interfere with their adult trans children’s access to medical care. As Zoey Turtino writes in The Daily Campus, “This would be especially devastating for transgender youths seeking medical care without the knowledge of their potentially abusive parents.”
Victoria Rodriguez-Roldan, director of the Trans/GNC and Disability Justice Projects at the National LGBTQ Task Force, told The Hill: “A basic rule in mental health advocacy is that if the policy is being proposed solely by family members, then odds are it will be harmful,” adding: “This is because often we operate with the assumption that those relatives are the ones who know best, rather than those with lived experience, and fail to acknowledge how many times, those loved ones are not necessarily so loving, such as domestic abuse situations.”
Disability advocate and civil rights lawyer Alison Barkoff created an in-depth Twitter thread to explain what Kamala Harris got so wrong, and “what she SHOULD have focused on.”
I have spent much of the last 2 days thinking about the mental health plan from @KamalaHarris and how she could have gotten it so wrong. This thread is about that and what she SHOULD have focused on. #CripTheVote (1)
- Alison Barkoff (@AlisonBarkoff) November 27, 2019
The thread reflected on the Olmstead vs. LC decision, which began with plaintiffs Lois Curtis and Elaine Wilson, two women from Georgia living with psychiatric diagnoses and intellectual disabilities. Curtis and Wilson cycled in and out of hospitals, unable to receive the supports they needed in the community. The landmark Olmstead decision requires states to eliminate unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the least restrictive setting, and one that is appropriate to their needs. In the thread, Barkoff explains and provides evidence for how the Olmstead Rule, when enforced and implemented, results in a reduction in both incarceration and hospitalization.
In speaking only to family members regarding “SMI,” Harris was led to espouse principles that ran directly counter to her own disability plan.
The psychiatric hospitals in Olmstead are the very “Institutions for Mental Disease” that Harris proposes to double the number of beds in! If she looked at DOJ #Olmstead settlements, she’d understand that her proposal would move states further from complying with the law! (9)
- Alison Barkoff (@AlisonBarkoff) November 27, 2019
At every turn, the disability community has fought the pro-force agenda, often managing to weaken the most coercive policy proposals without eliminating them altogether. Advocates mobilized quickly to respond to the worst aspects of the Harris mental health plan. They share that Harris was about to issue a revised plan in response to the disability community concerns, which would have eliminated the IMD repeal plank, the AOT plank, and the reducing HIPAA privacy rights plank. The Harris campaign was instead planning to include more of an emphasis on enforcing Olmstead and expanding community services first before developing more hospital beds.
The Pro-Force Agenda Is Not Going Anywhere
Over the last twenty years, a growing cadre of caregivers, family members, and grassroots organizations, calling themselves the “SMI community,” have been wildly successful in promoting the pro-force agenda, both in the mainstream media and in local, state, and national policy.
Robert Whitaker and others have written about the decades-long crusade of Dr. E. Fuller Torrey to increase force and coercion, and to reduce privacy protections throughout all aspects of the U.S. mental health care system. In 1998, Torrey founded a national advocacy and media mouthpiece in the Treatment Advocacy Center, of which author of Insane Consequences: How The Mental Health Industry Fails The Mentally Ill and creator of MentalIllnessPolicy.org, was a founding board member. Both Torrey and Jaffe are frequently consulted by both the right- and left-wing media as policy experts, and their views are frequently amplified by journalist Pete Earley in his popular newsletter and blog.
On Facebook and in his newsletter, DJ Jaffe took partial credit for the Harris plan, with credit also going to Scott and Leslie Carpenter. The Carpenters are an Iowa couple, parents of a son labeled with SMI, who have been distributing pro-force policy documents to the candidates visiting Iowa ahead of the presidential election. From their position, they are well poised to exert an ongoing influence on presidential candidates. The Carpenters are also credited directly on multiple occasions by Ron Powers, author of the 2017 New York Times bestseller No One Cares About Crazy People: The Chaos and Heartbreak of Mental Health in America.
Powers wrote an effusive blog in support of the Harris plan, in which he stated: “In one breathtaking stroke, Kamala Harris has just widened the contours of presidential campaign history and thrown light into the darkest corridors of shameful human suffering.”
Powers also wrote a blog entitled “The Anti-Treatment Empire Strikes Back” as a response to Sara Luterman’s Vox piece critiquing the Harris plan. In it, Powers resorts to a tactic often employed by the pro-force advocates: to discredit their critics through ad hominem attacks and strategic falsehoods. In this blog, Powers describes Luterman as being “anti-treatment.” But Luterman does not take an “anti-treatment” stance, just an anti-forced treatment one.
Luterman clarified: “I’m against the use of force to push medications and treatment modalities that can be harmful,” adding: “Some people are overmedicated. Some people don’t actually do better on meds and would be fine with more holistic interventions. People deserve to make such major choices about their own lives.”
In a further effort to discredit Luterman, Powers accuses her of being a “Szazian,” and by extension, possibly a Scientologist. Luterman is not a Scientologist, and told this reporter via Twitter that she has never even read Szasz. “They just made a bunch of stuff up about me out of whole cloth,” Luterman said.
In recent years, additional family members have written books with policy positions mirroring those promoted by Dr. Torrey, DJ Jaffe, Ron Powers, and their acolytes. These include DeDe Ranahan, a self-described member of the “SMI community” who wrote a book entitled Sooner than Tomorrow: A Mother’s Diary about Mental Illness, Family, and Everyday Life. Ranahan appears to be using her platform as an author to mobilize for a pro-force agenda, with a focus on the current crop of Democratic presidential hopefuls. In August, journalist Pete Earley published her group’s Five Point Plan on his website , as did Ron Powers , from which the Harris plan lifted heavily and directly on nearly every single point, down to the fine details.
While Harris is out of the race, the extremist ideas that inspired the first draft of her mental health plan, which remains on her website, continue to endure and proliferate. Over the last twenty years, the current socio-political climate has been heavily influenced by the pro-force agenda. The American public and lawmakers on both sides of the aisle are ever-more receptive to the narrative that certain people with mental health problems are dangerous and/or “lack insight,” and therefore must be forced into treatment against their will.
A study published in October in Health Affairs found that public perceptions regarding potential violence and support for coercion have been rising, especially concerning the diagnosis of schizophrenia . The study’s authors concluded: “Despite solid evidence that people with mental illness are unlikely to be dangerous, such prejudice can lead to support for inappropriately using legal means to force people into treatment.”
And the SMI community isn’t going anywhere. On December 5, shortly after Harris’s exit from the Democratic presidential race, Ranahan published an updated and expanded version of the original Five Point Plan. The new plan seems to target Olmstead protections specifically raised by disability rights advocates. There is a point under “Pay attention to supportive housing” that states: “Clarify Olmstead for SMI. Least restrictive care isn’t always least expensive or best” and “Examine, don’t ignore, a person’s ability to handle and benefit from a less restrictive setting.” This rhetoric aligns with consistent efforts on behalf of the pro-force advocates to divorce the arbitrary category of “SMI” from the rights and protections afforded to all other persons with disabilities or diagnoses.
Under the “Revamp Involuntary Treatment” category, the updated plan advocates to expand the criteria for forced mental health care, calling for “lack of insight (anosognosia) and grave disability as criteria for determining involuntary treatment.” The group wishes lawmakers to “Establish a federal standardized ‘need for treatment’ involuntary commitment law” and, in an apparent response to Olmstead , says to “Base restrictive settings on actual abilities, not wishful thinking or one-track plans.”
Ranahan clarifies the SMI community’s plans to influence candidates going forward, with a strategy to “Refocus our efforts on the remaining candidates — Republican and Democrat. Right now Buttigieg and Klobuchar have good plans. Warren and Booker are working on plans. The White House will be hosting a summit on Transforming Mental Health Treatment to Combat Homelessness, Violence and Substance Abuse on December 19. Thank you for your help.”
The Harris mental health plan rallied the disability community once again to fight for “Nothing about us, without us” and to demand an acknowledgement of the principles of the Olmstead decision. Now, the SMI community has Olmstead in the crosshairs. Decades of hard-won rights to liberty, self-determination, and privacy are in the balance.
“All we can do is share information,” Kathy Flaherty, executive director of the Connecticut Legal Rights Project, told The Hill. “It’s the elected officials or their staff who have to carefully consider all the information they receive and then make responsible, well-informed decisions. . . . Clearly we are still learning how to most effectively communicate our message to folks at the national level, but I do think ultimately it’s on them to do a bit more to facilitate access.”
Bad mental health policy is, regrettably, a bipartisan enterprise. #CripTheVote
- Ari Ne’eman (@aneeman) November 26, 2019
Leah is Mad in America’s political correspondent. She has previously been a blogger for MIA; her writings have also been published in the Huffington Post, Psychology Today, Medium and other forums. A longtime activist, she writes about mental health, trauma, addiction, and suicide as matters of social justice.
Originally published at https://www.madinamerica.com on December 11, 2019.